The hits and misses of India’s tuberculosis policy in six charts

In 2019, the Indian government recorded over 2.4 million tuberculosis cases – 275 cases per hour –including new and relapsed cases, and marking an increase of 14.3% from 2018, according to the 2020 Annual TB report of the Ministry of Health and Family Welfare.

Of these 2.4 million cases, 90% or 2.16 million were cases that occurred in 2019, known as the incidence of the disease in medical parlance. This means that India now records 80% of the total estimated 2.69 million cases that occur yearly in the country. This is an improvement from 2013, when India would record only 69% of the estimated 2.1 million cases.

India, with 27% of the world’s TB cases, has the most cases of any country in the world. China, with the second most cases, had an estimated 866,000 cases or 61 cases per 100,000 in 2018, compared to India’s 199 per 100,000, data from the World Health Organisation show.

Here is a look at how India has done in managing TB since 2012 through six charts based on data from India’s annual TB reports and the evaluation of the Joint Monitoring Mission Report 2019.

Unlikely to meet goal

India loses $32 billion, or Rs 2.2 lakh crore, every year because of TB. The Indian government has said that the country would reduce new TB cases every year to 44 per 100,000 by 2025, but that goal is likely to be missed, data show. The estimated incidence rate reduced by 2.4% between 2017 and 2018, slower than the 10% annual drop required.

“The elimination goal has led to better leadership within the central TB division as well as more efficiency and openness from the bureaucrats,” which has also percolated down to the districts, said Shibu Vijayan, the global technical TB director of PATH, an NGO that works with the government to involve the private sector in TB response. Some states might meet the elimination goal but a lot still needs to be done in the states with weaker health systems, he said.

The government has not released data on the prevalence of tuberculosis – all TB cases in the population and not just new cases that occurred in a given year – and a TB prevalence study is currently underway. Estimates from data from this survey from seven districts show that India might have 350 cases of TB per 100,000 population, compared to the estimated incidence of 200 cases per 100,000 in 2019, according to the 2019 Joint Monitoring Mission report, prepared in November 2019 and released in June 2020, a collaborative effort of researchers, organisations and community organisations to evaluate India’s TB control programme. This shows that many patients “remain outside the programme or remain undiagnosed and untreated”, the report said. “Without further action and investment, 24 million new tuberculosis household infections will occur by 2025.”

Fewer ‘missing’ cases

To improve recording of TB cases, access to drugs and treatment completion, in May 2012 the Indian government ordered all private healthcare providers to register TB cases with the government. Since then, reporting of TB cases by the private sector has grown 200 times from 3,106 TB cases in 2012, data from government reports show. In the same period, registered cases in the public sector grew by 21%.

Covid-19 pushed notifications down by 46% between March and June 2020, compared to the same period in 2019, as IndiaSpend reported in June 2020. Whether the gains in notifications are carried forward this year will depend on reporting of TB cases over the next six months, experts said.

To push the private sector, the government made it a criminal offence if any healthcare provider fails to report a TB case, IndiaSpend reported in March 2018. This law is rarely used, said Vijayan of PATH.

“There has been a change in the approach of the public sector towards the private sector,” which has led to this increase in notifications from the private sector, said Vijayan. New policies, the government’s openness to working with them and the shift to outcome-based funding, under which organisations assisting local governments are paid not for projects but based on outcomes such as TB case notifications and treatment completion, has helped, Vijayan explained.

The government has also undertaken several projects to “actively” find TB cases in the population, which refers to screening people for symptoms of TB and then testing them. These include special projects in North and South Parganas in the Sunderbans and among Tibetan refugee communities and by using mobile vans for diagnosis. In 2019, as many as 393 million were considered vulnerable to TB across the country, of which 71%, or 277 million, were screened, the 2020 TB report said. Of those screened, 0.7% or 2 million were tested and over 62,000 found positive, data show.

This increase in notifications has resulted in fewer “missing cases”, from 640,000 cases missing in 2013 to 530,000 cases in 2019, according to data from the World Health Organisation and India’s TB reports. The number of cases not in government records could be higher than these estimates, as about 60% of patients seek treatment in the private sector, according to various studies, while only 26% cases notified were from the private sector in 2019.

Better patient tracking

The government’s National Tuberculosis Elimination Programme, erstwhile the Revised National Tuberculosis Control Programme, classifies patients into two groups: those that have been diagnosed with TB for the first time and hence are a “new case”; and those who had TB in the past but had to be re-treated because the previous treatment regimen failed, or recovered TB patients who have relapsed, known as “previously treated cases”.

In 2018, 78% of previously treated patients who were notified by the public sector successfully completed treatment as compared to 68.5% in 2017. Of new patients in 2018, 86% successfully completed treatment compared to 81% in 2017, data show.

For patients treated in the private sector, the annual report does not provide data separately for previously treated and new cases. In 2018, 71% of those treated in the private sector successfully completed treatment, but whether these details were independently verified is unknown. This is nearly double the 35% in 2017, government data show.

“Hundreds of thousands [of notified patients] are lost along their journey through diagnosis and treatment, particularly among those reported by private providers,” said the 2019 JMM report. “Furthermore, many patients reported by private providers could not be confirmed to have completed treatment.” The report recommended an auditing system to verify outcomes and patient tracking after the completion of treatment to make sure they do not relapse.

Researchers have found that the government programme might be overestimating the number of patients recovered, as IndiaSpend reported in November 2016. This is because even though the Standards for TB Care in India recommend that patients should be examined after six and 12 months of treatment completion, the annual reports do not provide that information.

To make sure that people are able to access TB drugs easily and throughout their treatment, the national TB programme should also make sure that public pharmacies are always well-stocked with TB drugs while also making quality drugs available at local private pharmacies and the government’s Jan Aushadhi pharmacies that provide cheaper drugs, and tracking their sales, the 2019 JMM report suggested. This model is being followed in some cities.

Drug-resistant tuberculosis

Drug-resistant tuberculosis is a more virulent and difficult form of TB in which the TB bacteria become resistant to certain medications. Drug-resistant TB can occur if someone contracts a resistant form of the disease or because of incorrect or incomplete treatment for TB.

Recorded cases of multidrug resistant TB in which the TB bacteria is resistant to the two more commonly used medicines to treat TB – isoniazid and rifampicin – have been steadily increasing, but India still misses about half of the estimated 130,000 MDR-TB or rifampicin resistant TB cases.

One of the reasons for the missing TB cases could be a lack of testing for drug resistance. “Despite a commitment to implement universal DST for people diagnosed with TB, a substantial proportion of TB patients [approximately 64%] remain without an effective DST-guided treatment in 2018,” said the 2019 JMM report. DST refers to drug sensitivity testing to confirm which drugs TB patients might be resistant to.

Since 2017, the Indian government has been adopting newer drug regimens and new drugs to treat drug-resistant TB. For instance, in 2019, of all drug resistant TB patients put on treatment, 71% were given a shorter drug regimen of 9-11 months compared to the 24-27 month treatment given earlier.

The treatment success for multidrug resistant and rifampicin resistant cases on the shorter drug regimen was lower at 60%, government data from 2018 show.

For extensively drug-resistant TB or XDR-TB, in which the TB bacteria become resistant to almost all of the older known medicines, the government has since 2018 been using bedaquiline and delamanid, two new medicines approved for use in India in 2016 and 2017, respectively, for some patients.

India recorded 2,323 cases of XDR-TB in 2018.

More incentives, bigger budget

Some of the increase in notifications from both the public and private sectors has come because of a slew of incentive programmes, through direct benefit transfer by the government.

The incentives programme still has a long way to go, as per experts and the 2019 JMM. For instance, between January and June 2019, of all drug-resistant TB patients who were notified, only about half received the first incentive under the Nikshay Poshan Yojana. For regular TB patients, 52% in the public sector received the first DBT while only 22% in the private sector did, the 2019 JMM report found.

Overall, between 2015-’16 and 2019-’20, the central TB programme’s budget estimates increased by 420%, according to the annual TB report 2020. But there were delays in releasing funds. As much as 57% of the 2019-’20 budget had not been released to “high focus states”, such as Uttar Pradesh and Bihar, and 63% had not been released to Northeastern states by November 2019, found the 2019 JMM.

This article first appeared on IndiaSpend, a data-driven and public-interest journalism non-profit.